AMA Journal of Ethics®

Illuminating the art of medicine

February 2011 Contents

Ethical Challenges in Community-Based Participatory Research

Ethics Poll

Most new-patient intake forms ask individuals to check the box that most closely describes their race or ethnicity. Which of the following best describes how you feel about this practice?

The race/ethnicity box provides medically relevant information for clinicians and is a valuable element of the intake form.

The patient's selection on the race/ethnicity box causes clinicians to make assumptions about the patient and see him or her less as an individual than as a member of a certain community.

Don't know.

One challenge faced by community-based participatory research is the question of individual consent versus consent of the community as a whole. Individuals may participate, perhaps after receiving an incentive to do so, and the research findings may be extrapolated to the community as a whole in a way that the community finds unflattering or defaming. This is especially true in small, well-defined communities or tribes. In such communities, do you think:

The community as a whole through its leaders has the right to prohibit individuals from participating in the research.

The community as a whole does not have the right to prohibit individuals from participating in the research.

Don’t know.

Successful community-based research uses the knowledge and skills of all partners to understand barriers to health and institute new ways of behaving that will reduce a given health disparity. These are not the outcomes traditionally rewarded by academic promotion and tenure committees. How do you think community-based researchers should be evaluated for promotion and tenure?

On the same basis as other researchers, e.g., publications, quality of teaching, and administrative service, in that order of priority. Otherwise the field will lose its rigor and its claim to being "real science."

There should be a separate set of criteria that evaluates community-based researchers on the changes in communities rather than on publications, teaching, and service.